The rare disease that makes the skin grow fast – 05/22/2023 – Equilibrium

At 26 years old, young Rhiannon Morgan is used to receiving stares from strangers.

He is one of the few people in the UK living with a rare genetic skin condition called epidermolytic ichthyosis.

Their skin grows very fast, making them prone to blisters and causing significant mobility issues.

Rhiannon hopes that raising awareness of these types of visible disabilities will serve to promote a more accurate and inclusive representation of them in society.

Rhiannon’s life was marked by comments about her condition. At the supermarket, people would ask if what she had was contagious.

“When I was born, I looked like I had gloves on my hands and socks on my feet,” says Rhiannon.

“While smiling and taking it lightly, living with a visible difference is exhausting and can be incredibly lonely,” he adds.

She recalls that “Strangers and colleagues alike thought it normal to ask me if I had been burned in a house fire.”

Her skin grows very fast due to a genetic abnormality, which also makes her prone to infections, blisters and hypersensitivity. This causes significant mobility issues, especially with her joints and hands, and she often needs to get around in her motorized wheelchair.

“I spend about five hours a day looking after my skin,” explains Rhiannon, who lives in Bridgend, in the south west of the UK.

‘They refused to sit next to me’

She was diagnosed with this rare condition at birth when midwives noticed that her skin sloughed off easily.

“When I was born, I looked like I had gloves on my hands and socks on my feet, which was a telltale sign of where this would affect me the most,” he says. “I was very lucky to be diagnosed at birth, as I was able to receive the medical treatment I needed early on.”

Since then, however, Rhiannon claims to have experienced the social barriers of living with a noticeable difference.

“Some colleagues even refused to sit next to me”, he claims.

This greatly affected the way she saw herself during school and, as a teenager, avoiding mirrors became commonplace.

“I was a medical anomaly, so when I looked, in my reflection I saw someone who was not normal,” he adds.

Impact on mental health

Whenever she had a medical appointment, Rhiannon was observed by other doctors and medical students. She had to endure years of being watched with a magnifying glass and by strangers.

According to Rhiannon, this “harmed” her mental health and her perceptions of her own appearance.

When she was 13, she attended a medical conference where, she says, she was forced to sit on a bed in her bra and panties and a lab coat. There she had to repeatedly speak with “about 100 doctors” who wanted to learn everything about her skin.

“Some were nice, some had no manners, one even came over and inspected me with a wooden tongue depressor,” he recalls.

But she explains that her condition has not only brought her negative experiences.

“It also gave me many skills. It made me exercise empathy, see beauty where others cannot and experience the world in a unique way”, he highlights. “Wouldn’t trade it for anything.”

Rhiannon’s story is one of those starring in a campaign organized by the NGO Changing Faces to raise awareness in the UK about visible illness and encourage more positive representations in society.

According to a poll carried out by the Focaldata research institute, 33% of British people remember seeing someone with a visible difference on television.

This text was published here